The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care [CG137]

Measuring the use of this guidance

Recommendation: 1.3.1

Children, young people and adults with epilepsy and their families and/or carers should be given, and have access to sources of, information about (where appropriate):
epilepsy in general
diagnosis and treatment options
medication and side effects
seizure type(s), triggers and seizure control
management and self-care
risk management
first aid, safety and injury prevention at home and at school or work
psychological issues
social security benefits and social services
insurance issues
education and healthcare at school
employment and independent living for adults
importance of disclosing epilepsy at work, if relevant (if further information or clarification is needed, voluntary organisations should be contacted)
road safety and driving
prognosis
sudden death in epilepsy (SUDEP)
status epilepticus
lifestyle, leisure and social issues (including recreational drugs, alcohol, sexual activity and sleep deprivation)
family planning and pregnancy
voluntary organisations, such as support groups and charitable organisations, and how to contact them

What was measured: Proportion of patients reported that they had been provided with general epilepsy information from a health professional

Data collection end: September 2012

44%

Number that met the criteria: 412 / 947

Area covered:

England

Source:

Epilepsy Action A critical time for epilepsy in England

What was measured: Proportion of children with epilepsy and their parents/carers who reported that they were provided with information on lifestyle including water safety

Data collection end: May 2014

70%

Number that met the criteria: 25 / 34

Area covered:

Local

Source:

Ghazavi MG (2015) Audit of information provided to parents of children with epilepsy. Archives of Disease in Childhood. var.pagings April

Recommendation: 1.3.11

Information on SUDEP should be included in literature on epilepsy to show why preventing seizures is important. Tailored information on the person's relative risk of SUDEP should be part of the counselling checklist for children, young people and adults with epilepsy and their families and/or carers

What was measured: Proportion of people who reported being given information about epilepsy related death

Data collection end: September 2012

13%

Number that met the criteria: 126 / 947

Area covered:

England

Source:

Epilepsy Action A critical time for epilepsy in England

What was measured: Proportion of children with epilepsy and their parents/carers who reported that they were provided with information on sudden unexpected death in epilepsy (SUDEP)

Data collection end: May 2014

32%

Number that met the criteria: 11 / 34

Area covered:

Local

Source:

Ghazavi MG (2015) Audit of information provided to parents of children with epilepsy. Archives of Disease in Childhood. var.pagings April

What was measured: Proportion of children and young people who have been informed about risk of SUDEP.

Recommendation: 1.3.13

Tailored information and discussion between the child, young person or adult with epilepsy, their family and/or carers (as appropriate) and healthcare professionals should take account of the small but definite risk of SUDEP. [2004]

What was measured: Male patients who had a documented discussion about SUDEP

Recommendation: 1.4.5

It is recommended that all adults having a first seizure should be seen as soon as possible (within 2 weeks) by a specialist in the management of the epilepsies to ensure precise and early diagnosis and initiation of therapy as appropriate to their needs

What was measured: Proportion of people (adults and children) diagnosed with epilepsy in the last two years who reported being seen by the appropriate specialist within two weeks

Data collection end: September 2012

7%

Number that met the criteria: 12 / 177

Area covered:

England

Source:

Epilepsy Action A critical time for epilepsy in England

Recommendation: 1.5.1

The diagnosis of epilepsy in adults should be established by a specialist medical practitioner with training and expertise in epilepsy

What was measured: Proportion of adults diagnosed in the last two years who reported being diagnosed by an epilepsy specialist clinician

Data collection end: September 2012

20%

Number that met the criteria: 35 / 174

Area covered:

England

Source:

Epilepsy Action A critical time for epilepsy in England

Recommendation: 1.6.3

Children, young people and adults requiring an EEG should have the test performed soon after it has been requested (within 4 weeks)

What was measured: Proportion of people with epilepsy referred for investigations in the last two years with an average reported waiting times of under four weeks for a standard EEG referral

Data collection end: September 2012

41%

Number that met the criteria: 177 / 436

Area covered:

England

Source:

Epilepsy Action A critical time for epilepsy in England

Recommendation: 1.6.7

The EEG should not be used to exclude a diagnosis of epilepsy in a child, young person or adult in whom the clinical presentation supports a diagnosis of a non-epileptic event. [2004]

What was measured: Children who had an EEG where there were no contraindications (i.e. it was appropriate)

Data collection end: May 2011

91.77%

Number that met the criteria: 4538 / 4945

Area covered:

National

Source:

Royal College of Paediatrics and Child Health. Epilepsy12 national report.

Recommendation: 1.6.20

MRI should be the imaging investigation of choice in children, young people and adults with epilepsy. [2004]

What was measured: Children who had defined indications for an MRI who had MRI by 1 year

Data collection end: May 2011

63.7%

Number that met the criteria: 716 / 1124

Area covered:

National

Source:

Royal College of Paediatrics and Child Health. Epilepsy12 national report.

Recommendation: 1.6.22

Children, young people and adults requiring MRI should have the test performed soon (within 4 weeks)

What was measured: Proportion of newly diagnosed (within the last two years) people with epilepsy who reported receiving an MRI scan and received this within four weeks

Data collection end: September 2012

50%

Number that met the criteria: 83 / 165

Area covered:

England

Source:

Epilepsy Action A critical time for epilepsy in England

Recommendation: 1.7.1

Epileptic seizures and epilepsy syndromes in children, young people and adults should be classified using a multi-axial diagnostic scheme. The axes that should be considered are: description of seizure (ictal phenomenology); seizure type; syndrome and aetiology. [2004]

What was measured: Children who had their seizures classified by 1 year

Data collection end: May 2011

86.99%

Number that met the criteria: 1544 / 1775

Area covered:

National

Source:

Royal College of Paediatrics and Child Health. Epilepsy12 national report.

What was measured: Children who had appropriate epilepsy syndrome classification by 1 year

Data collection end: May 2011

37.18%

Number that met the criteria: 660 / 1775

Area covered:

National

Source:

Royal College of Paediatrics and Child Health. Epilepsy12 national report.

What was measured: Proportion of children and young people who have epilepsy syndrome classification.

Recommendation: 1.8.1

Children, young people and adults with epilepsy should have an accessible point of contact with specialist services

What was measured: Proportion of acute trusts that provide an epilepsy service, that reported offering their patients access to an adult epilepsy specialist clinician.

Data collection end: September 2012

66%

Number that met the criteria: 52 / 79

Area covered:

England

Source:

Epilepsy Action A critical time for epilepsy in England

What was measured: Proportion of acute and foundation trusts that provide a paediatric epilepsy service and reported offering their patients access to a paediatric epilepsy specialist nurse

Data collection end: September 2012

43%

Number that met the criteria: 21 / 49

Area covered:

England

Source:

Epilepsy Action A critical time for epilepsy in England

Recommendation: 1.8.2

All children, young people and adults with epilepsy should have a comprehensive care plan that is agreed between the person, family and/or carers where appropriate, and primary care and secondary care providers. This should include lifestyle issues as well as medical issues

What was measured: Proportion of people with epilepsy who reported having a written care plan

Data collection end: September 2012

14%

Number that met the criteria: 128 / 947

Area covered:

England

Source:

Epilepsy Action A critical time for epilepsy in England

What was measured: Proportion of acute trusts reporting that their patients with epilepsy are routinely offered care plans

Data collection end: September 2012

47%

Number that met the criteria: 43 / 91

Area covered:

England

Source:

Epilepsy Action A critical time for epilepsy in England

Recommendation: 1.8.3

Epilepsy specialist nurses (ESNs) should be an integral part of the network of care of children, young people and adults with epilepsy. The key roles of the ESNs are to support both epilepsy specialists and generalists, to ensure access to community and multi-agency services and to provide information, training and support to the child, young person or adult, families, carers and, in the case of children, others involved in the child's education, welfare and well-being.

What was measured: Children who were referred for input by an epilepsy specialist nurse by 1 year (whole UK)

Data collection end: May 2011

46.14%

Number that met the criteria: 819 / 1775

Area covered:

National

Source:

Royal College of Paediatrics and Child Health. Epilepsy12 national report.

What was measured: Proportion of adults with epilepsy who reported seeing an epilepsy specialist nurse

Data collection end: September 2012

52%

Number that met the criteria: 475 / 905

Area covered:

England

Source:

Epilepsy Action A critical time for epilepsy in England

What was measured: Proportion of children who are still having seizures who reported seeing an epilepsy specialist nurse

Data collection end: September 2012

58%

Number that met the criteria: 86 / 149

Area covered:

England

Source:

Epilepsy Action A critical time for epilepsy in England

Recommendation: 1.9.1.1

Information that is provided about anti-epileptic drugs (AEDs) needs to be in the context of that provided by the manufacturer, for example, indications, side effects and licence status

What was measured: Proportion of patients with epilepsy who reported being given information about their medication and its effects from a health professional

Data collection end: September 2012

50%

Number that met the criteria: 472 / 947

Area covered:

England

Source:

Epilepsy Action A critical time for epilepsy in England

Recommendation: 1.10.1

All children, young people and adults with epilepsy should have access via their specialist to a tertiary service when circumstances require

What was measured: Proportion of all acute trusts surveyed reported that they do refer to tertiary epilepsy centres

Data collection end: September 2012

95%

Number that met the criteria: 76 / 80

Area covered:

England

Source:

Epilepsy Action A critical time for epilepsy in England

Recommendation: 1.10.2

If seizures are not controlled and/or there is diagnostic uncertainty or treatment failure, children, young people and adults should be referred to tertiary services soon for further assessment. Referral should be considered when one or more of the following criteria are present:
the epilepsy is not controlled with medication within 2 years
management is unsuccessful after two drugs
the child is aged under 2 years
a child, young person or adult experiences, or is at risk of, unacceptable side effects from medication
there is a unilateral structural lesion
there is psychological and/or psychiatric co-morbidity
there is diagnostic doubt as to the nature of the seizures and/or seizure syndrome. [2004]

What was measured: Proportion of patients (adults and children) with epilepsy who are still having seizures and have reported being referred to a specialist tertiary epilepsy centre

Data collection end: September 2012

27%

Number that met the criteria: 187 / 682

Area covered:

England

Source:

Epilepsy Action A critical time for epilepsy in England

Recommendation: 1.15.1.2

Information about contraception, conception, pregnancy, or menopause should be given to women and girls in advance of sexual activity, pregnancy or menopause, and the information should be tailored to their individual needs. This information should also be given, as needed, to people who are closely involved with women and girls with epilepsy. These may include her family and/or carers. [2004]

What was measured: Proportion of women with epilepsy who died during or after pregnancy who received pre-conception counselling.

Recommendation: 1.15.1.4

Discuss with women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years), and their parents and/or carers if appropriate, the risk of AEDs causing malformations and possible neurodevelopmental impairments in an unborn child. Assess the risks and benefits of treatment with individual drugs. There are limited data on risks to the unborn child associated with newer drugs. Specifically discuss the risk of continued use of sodium valproate to the unborn child, being aware that higher doses of sodium valproate (more than 800 mg/day) and polytherapy, particularly with sodium valproate, are associated with greater risk. [new 2012]

What was measured: Females aged 12 years or over given regular anti-epileptic drugs who had a documented discussion of pregnancy or contraception

Data collection end: May 2011

37.8%

Number that met the criteria: 56 / 148

Area covered:

National

Source:

Royal College of Paediatrics and Child Health. Epilepsy12 national report.

Recommendation: 1.17.4

During adolescence a named clinician should assume responsibility for the ongoing management of the young person with epilepsy and ensure smooth transition of care to adult services, and be aware of the need for continuing multi-agency support. [2004]

What was measured: Paediatric neurology centres that had a specific transition service for young people with epilepsy

Data collection end: December 2011

83.33%

Number that met the criteria: 15 / 18

Area covered:

National

Source:

Iyer A & Appleton R (2013)Transitional services for adolescents with epilepsy in the UK: A survey. Seizure, Vol 22 pp433-437

Recommendation: 1.20.1

Children, young people and adults with epilepsy should have a regular structured review and be registered with a general medical practice

What was measured: Proportion of adults still having seizures who reported being offered an epilepsy review

Data collection end: September 2012

68%

Number that met the criteria: 206 / 305

Area covered:

England

Source:

Epilepsy Action A critical time for epilepsy in England

Recommendation: 1.20.4

For adults, the maximum interval between reviews should be 1 year but the frequency of review will be determined by the person's epilepsy and their wishes

What was measured: Proportion of adults with epilepsy who reported being offered or took part in an epilepsy review in the last twelve months

Data collection end: September 2012

63%

Number that met the criteria: 597 / 947

Area covered:

England

Source:

Epilepsy Action A critical time for epilepsy in England

Recommendation: 1.20.5

For children and young people, the maximum interval between reviews should be 1 year, but the frequency of reviews should be determined by the child or young person's epilepsy and their wishes and those of the family and/or carers. The interval between reviews should be agreed between the child or young person, their family and/or carers as appropriate, and the specialist, but is likely to be between 3 and 12 months

What was measured: Proportion of children and young people with epilepsy who reported being offered an epilepsy review in the last twelve months